Today i went to see my primary care Doc. last week the hematologist. and i had an appointment for the pulmonary doc set up for Feb. and his nurse called yesterday and said and said he wants to see me next week. now i am even more scared. i was hospitalized Oct 16-28 with multiple bilateral PE'S. first of all i assumed because the first PE was from a known cause and i had a filter and anti coagulated i couldn't get a clot. i assumed it was worse asthma ever. boy was i wrong. since then it has been discovered basically i feel like i am screwed. the filter is not helping at all. it was the source of the clots. it can't be removed it is to dangerous. at this point they don't think it is a good idea to put in another one. i hemorrhaged on warfarin in Jan nearly died because our local E.R. sent me home 3 times just kept asking what street drugs i was on. so i waited for the one doc i trusted she flipped a gasket and sent me to another town i needed an immediate thorocentesis to empty the blood from the sac around my heart and lung from a rupture, i spent the first 4 days in and out of consciousness. hence failed warfarin and placed on plavix and aspirin. then comes this Oct actually should back up to July when my leg hurt and i flew on two airplane flights struggling to breath thinking it was pneumonia from being in my parents home 7 packs of ciggs between them daily . got sicker and sicker till i went to ER in the better town and immed he knew PE . they never told me how bad it was. the hematologists told me when i saw him the 75-80% of both pulmonary arteries were blocked said i'm lucky to be alive. he says i have a genetic predisposition to hemorrhage. so he is talking about slowly getting me back on warfarin and after leaving his office i realize how on earth is that even possible the margin for error in the inr numbers would be so small go to high in the slightest i could hemorrhage go to low even a little i clot i feel like i am screwed . i am scared. i have been in so much pain and so discouraged and worried. my husband died two years ago from cancer and our daughter is the youngest she was everything to him and she was daddys girl she turned 17 while i was in the hospital. i am so scared she has been through so much of this type of crap. my boys have already left home and don't have to see this. i have tried to hide as much as possible from my daughter. but there is no hiding anymore. the meds have me swollen 75 lbs. i am in pain puking all the time.i try not to let her know what the docs tell me. twice they have told me your not likely to make it you might want to say bye to your children.
right now i feel the urgent need to put financial thing in order and to write letters to my children.after this last incident and how fast things can happen i feel like i need to have some things written for my children just in case. i am scared. this had happened to many times. one time i was driving home and lost all memory of what happened for all together 6 days. on the one hand i am so grateful because those are over done and healed. i definitely have cognitive function loss from the first PE i had to have surgery to remove part of the clot and it caused a stroke which caused loss off reading , writing, memorization skills. i self taught myself many of those skill and took them back as best i could. i am scared of not having someone to take care of me like i took care of my husband. i guess after this last embolism and the noose gets tighter and the abilities of the medications to control things are less and less i get more afraid. i appreciated and was grateful for these godawful medications. we hate them but everyday we are alive we are grateful for them. thanks for letting me vent
today when i was talking with my PCP of 15 years i quote you are the hardest clotting patient by far that i have ever had" I am having the hematologist and the coumadin clinic take over you care regards to the clotting because i have never in all my years seen anything or anyone react the way you have. i covered my ears and said i really did not hear you say what i thought you said you could not have said that. he said yes you are be far the hardest patient to stabilize